A fund raising fun day has been arranged for the family of a 15 month old girl who has spent all but three weeks of her life in Great Ormond Street Hospital after she was born with a rare heart condition and only one lung.
Amie and Tom Stearne take it in turns to spend a week at the bedside of Gabriella leaving the other parent to care for their daughters Alexis, eight, and three year old Imogen at their Leverington home.
It means the couple have spend no time together since she was born in May 2015.
Amie’s mum said that because of Gabriella’s complex health needs she can only leave hospital when they have at least three additional people trained to care for a child needing tracheotomy and ventilation care.
She said: “it has been very hard on the older girls, Tom has had to give up his job as a lorry driver, life has totally changed for us, but we take each day as it comes and get through, we are desperate for her to come home and be with us all.”
However, when she is home they will only be able to go out as a family if they have a seven seater vehicle as Gabriella’s life saving equipment takes up an extra seat and they need an additional space for the carer that is needed round the clock.
“Sadly, we spent months training carers with a company who promised they could provide the care package we need, only to be let down a couple of weeks ago when they pulled out,” she said.
“It means we need to start all over again finding carers to train. There don’t seem to be any companies who are able to take on her complex needs.”
Gabriella was born with the heart condition Scimitar Syndrome, TOF, and one lung.
She has had multiple surgeries and a prosthetic lung implanted to help the positioning of her airway and prevent curvature in the spine as she grows older.
The prosthetic lung needs enlarging every few months to match her growth rate.
She needs ventilating 24/7 via a tracheostomy attached to lots of machines which help her breathe after being diagnosed with Bronchomalacia, where her bronchial tubes are floppy due to so many operations.
Family friend Sheree Hoque stepped in to help when she pledged to arrange a fun day to help them buy a seven seater vehicle so they can create happy family memories on days out together. The family currently has a Ford Focus which is not big enough and disability funding for vehicles only cuts in when a child is three years old.
• Leverington family fun day for Gabriella is on Monday August 29 from noon to 4pm at the village social and sports club. There will be a teddy bears picnic with a competition for best teddy, a bottle tombola, children’s tombola, food, bouncy castle, face painting and glitter tattoos, cake stall, car boot sale, chicken chucking and a bra pong!
• Any donations for the tombola and raffle can be dropped to the Jolly Fryer in Wisbech.
• To donate to their fund raising mission visit Just Giving
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